“What the Future Holds” A Template for Families engaging in Permanency Planning that Spans the Quality of Life Domains

Author(s): Conliffe, C. & O’Grady, K.

Departments: Institute of Counselling and Personal Development, Belfast and Psychology Department, Sisters of Charity of Jesus & Mary / Muiriosa Foundation

Keywords: Permanency Planning, Quality of Life, Aging, Family Carers of Adults with Intellectual Disabilities

Reported: Published in Journal of Gerontology Social Work; Vol37; 3/4 2002 and in Frontline June 2003 and in IASSID World Congress Papers; Seattle, 2000 & Montpellier, 2004

(30 Jul 2008)

Introduction and aims: Families who provide life long care to adults with intellectual disability may struggle with questions around what the future holds for their offspring when, through aging and or declining health they are no longer able to continue to provide direct care and all that goes with this.

Methods: To guide such families in mindful permanency planning a template called “What the Future Holds” was designed. After a pilot study with 30 families, a further 60 families from 2 jurisdictions were consulted using the template, using mixed methodology of the quantitative tabulating of their responses combined with a qualitative analysis of their styles of planning. These styles were registered on a continuum from distinct non planners, to implicit planners, to tentative planners to proactive planners.

Conclusions: Many families warmly welcomed the process of facilitation in future planning and sought practical advice on complex issues such as consent, making wills, and establishing discretionary trust. Further research on this topic is needed in order to establish what constitutes Good Practice on this important topic.

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